Helping Employees Shoulder the Caregivers Burden

Barry Russell, a business officer for auxiliary services at University of Kentucky in Lexington, first realized something was wrong when his parents’ attorney called to say his stepfather’s finances were in total disarray. "Two weeks later my mom called and said, ‘The car’s gone,’ " he recalls. "I asked who took it, and she didn’t know."

It turned out the car had been repossessed. And that was just the beginning. His parents’ new home went into foreclosure—it had been purchased with a subprime loan.

Unbeknown to Russell, his stepfather had developed Alzheimer’s disease and was not paying bills. His mother also has some dementia. By the time Russell retained power of attorney, it was too late to save the home or the car. He now spends 10 to 20 hours a week helping his parents with everything, including grocery shopping, paying the bills and adjusting the thermostat.

Caregiving is challenging in most circumstances. But for employees caring for someone with dementia, life can become overwhelming.

According to the Alzheimer’s Association, an estimated 57 percent of the 10 million family caregivers for people with dementia are employed either full or part time.

More than 40 percent of such caregivers report high levels of emotional stress. Depression is common. On average, they miss 23 days of work productivity each year. Their caregiving duties cost U.S. businesses $36.5 billion, according to a 2002 study, including $10 billion in absenteeism, $18 billion in productivity losses and $6 billion to replace caregivers who leave their jobs. Not surprising, then, that many of these workers prefer not telling their employers of their caregiving responsibilities.

While roughly one-quarter of companies offer some type of elder-care benefit, the needs of dementia caregivers are "a breed apart," says Ian Kremer, chief communication officer for the Alzheimer’s Association’s National Capital Area Chapter. "It takes a different, more tailored response."

This month, the chapter is launching a pilot corporate assistance program aimed at human resources professionals, employee assistance programs and supervisors.

More than 5 million people have Alzheimer’s disease, a progressive terminal cognitive illness with no cure. By 2050, that number is projected to reach 16 million. Numbers like these led consulting firm Booz Allen Hamilton to initiate an Alzheimer’s "megacommunity," a network of government, private industry and civil society stakeholders who collaborate on raising awareness and promoting research and treatment.

"The main message for employers is to get involved, whether in the context of the megacommunity or helping their employees get access to information and help," says Booz Allen senior vice president Reggie Van Lee. "We need employers to get engaged."

A first step is recognizing the toll the disease takes on caregiving employees, experts say. "It can pose an incredibly higher level of stress than other kinds of care situations—not only stress, but financial problems," says Donna Wagner, who is director of gerontology at Towson University and studies workplace programs for caregivers.

Family caregivers may spend thousands of dollars out of pocket to help their loved ones, on such things as travel, groceries, home health aides and medical expenses, making their work income even more important.

Caregiving takes a physical toll as well. Margaret Neal, who is professor of community health at the Institute on Aging at Portland State University in Oregon and studies elder care and work/life balance, says she is now "living her research." Neal has handled repeated moves for her parents over the past 12 years because of her mother’s dementia-related behavior problems.

"My energy level is very low," she says. "I probably am depressed at this point. It’s just a lot to deal with. Then I injured my knee helping them move." To meet a deadline, she worked from 10 p.m. to 4 a.m. after helping with the move.

A 2004 AARP study found that family members caring for someone with dementia averaged 20 hours of care per week, although many provide 40 hours. Seventy percent of those caring for someone with dementia had to make a work adjustment, working short days, turning down a promotion or retiring early.

Mary Ann Sterling of Ashburn, Virginia, says she has been caregiving for as long as she can remember. Her father was 61 when she was born and developed signs of dementia when she was in her early teens. Her mother had to give up her nursing career at 57 to care for Sterling’s father. Eventually they moved in with Sterling and her first husband.

"The stress is enormous," she says. "The last thing you want to do after a long day of work is come home to a confused parent." The stress contributed to the end of her marriage, she said, and she lost her job in a biotech lab because she missed so much work.

Marjory Pizzuti, president and CEO of Goodwill Columbus in Ohio, sees the burden of caregiving from two angles: as a caregiver for her mother, who has dementia, and as the leader of a nonprofit employing 800 people. "How do you balance the need to be responsive to your employees with the need to be prudent with limited resources?" she says. "It’s not a perfect world. When folks are using their vacation time to care for a loved one, they don’t have a vacation, which they need more than anything to be re-energized and be better employees. So that’s the challenge."

She acknowledges that as CEO, she has more leeway than some employees to take time off. But she, too, used her vacation time to get her mother settled during a difficult time of transition. She gets calls from the nursing home almost daily. She tries to schedule care meetings over her lunch hour. In addition, like many caregivers, her younger child is still at home, and Pizzuti wants to take part in her daughter’s activities. Although she visits her mother on the weekend, she says, "There’s the constant feeling could I be doing more—even though I know she doesn’t remember."

What can employers do to best support employees caring for family members with dementia? According to the San Francisco-based Family Caregiver Alliance, those helping someone with Alzheimer’s need help in five key areas: information about the disease; emotional support; understanding shifting family roles; legal advice and finances, including information on how to meet the financial demands of the disease, such as insurance coverage; and provisions for long-term care.

Little research has been conducted on which workplace programs best meet those needs, Wagner says. Resource and referral services are the most common elder-care benefit, offered by 20 percent of organizations, but they may not help an overwhelmed caregiver. "Those are not good solutions for elder care and particularly for people dealing with dementia," she says. "The network is very complicated. It drives a professional crazy, let alone a daughter or a son."

"Flexibility and understanding—those are the two key things," Neal says.

A 2008 LifeCare poll of all types of employees found that a flexible work schedule was far and away the most important benefit in making them more productive on the job. According to a 2008 survey by the Society for Human Resource Management, 57 percent of employers offer some kind of flextime. Perhaps no group values that flexibility more than family caregivers for someone with Alzheimer’s.

Sterling certainly thinks so. Her father died in 2001, but she remains a part-time caregiver for her mother. Sterling now works in information technology for Citizant, a 130-employee company. "I’m lucky that the job is flexible," she says. "I can work from home on my laptop to make up for time missed from work."

One of the few workplace elder-care programs to be validated by research, says Wagner, is an on-site geriatric care manager. Fannie Mae was one of the first companies to offer this benefit. Ten years ago, Fannie Mae conducted a dependent-care needs assessment of its employees and found that 70 percent of respondents were either caring for an elder or would be in the next five years.

"We had a lending library, seminars and resources," says Michelle Stone, senior program manager for work/life benefits. "But we thought, how could we enhance this and be innovative?" The answer was a full-time geriatric social worker, contracted through the nonprofit Iona Senior Services in Washington, D.C.

Stone says employees seek help related to caregiving or their own health, including concerns about dementia. The service is free, unlimited and available during the workday. About 200 new employees consult it annually. The geriatric care manager offers counseling, holds family meetings with siblings and elders of the employee, and calls agencies on the employee’s behalf.

"If someone goes to her for an hour, and she makes calls for them and finds resources, it can take a lot of time and stress off employees, and they can get back to their desk," Stone says. The geriatric care manager is available by phone to Fannie Mae employees in other cities as well.

The University of Kentucky has two full-time elder-care specialists to consult with employees. "We assess what the needs are, not just of the elder but the caregiver as well," says Terri Kanatzar, elder-care coordinator at the university. "We educate them about Alzheimer’s and empower them to make decisions and take care of themselves." The program was honored with a best-practice award by the Institute for Workplace Innovation.

Russell, the University of Kentucky business officer, who typically works 50 hours a week, found the program invaluable. Through it, he learned about a new elder-transportation service that eased his caregiving demands. He also became involved in the university’s caregiver support program. He was recently chosen "supervisor of the year" for his work/life participation.

Another innovative program is offered by Intel at its location in Hillsboro, Oregon. Employees may attend a free six-week course called "Powerful Tools for Caregivers," which meets 90 minutes a week over lunch. The course, presented by Legacy Caregiver Services in Portland, is aimed at family caregivers for people with Alzheimer’s, Parkinson’s disease or other long-term conditions. Participants learn how to better manage their stress and emotional upheavals.